Mary
Forum Replies Created
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I requested mine today. Thank you! I had to go to ER with weakness and it was hard to get the information out to people. This will be beneficial if it happens again in the future to me.
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I experience all you state. I couldnt swallow properly before diagnosis. My weight went down to 99lbs. Once i got on Firdapse the feeding tube came out and i can eat all day. I have gained 30lbs.
My voice still comes and goes. The best time to talk is between doses. I use Biotene for dry mouth during the night. Dry mouth is aggrevating. I feel it is a miracle especially with weakness of my limbs. They tell me when my next dose is due. Thank you for all you do and education you share -
Im curious too. I have had back injection pain under anesthesia for several years. I have an appointment with pain clinic. I have had horrible pain in my lower back. I know that there can be lower back and hip pain being i take Firdapst but i think it is beyond that being i had back pain for several years prior. It may have aggrevated it. I need something done so i want to try it again but wont if the anesthesia this article talks about would be used. Has anyone else had steroid injections in their back while being treated for LEMS?
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Thank you so much for the information. I’ll certainly try your suggestions
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Im looking forward to Part2. I have to be on that diet and with weak muscles I havent been able to lift a pan until the Firdapse really kicked in. Im getting better but still ordering GF frozen meal very few choises are available. Thank you for sharing!
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Going for ride looking at all the trees turning bright yellow, orange and red. It flls my heart full of joy
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I walked down the same road. I lost alot of weight not wanting to risk blockage. It got out of control. I ended up with a feeding tube. Im able to swallow better now with treatment. Jumping on this issue right away is really smart.
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That does make me nervous. My insurance company pays a huge amount each month for Firdapse. Im afraid that wont last long either.
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Yes I did. I only had a sore arm. There wasnt after effect
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I received my booster. No side effects. Of coarse arm hurt overnight.
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I have gone through everything you just said. It is frustrating. Because you look good for your 15min it doesnt tell it 2 days to prepare for it. It seems that professionals i have gone to seem only what to address basic health issues. If the issue is deeper and more complicated i have to do my own research. He will do what i read but to give me any support or understanding he doesnt have time for.
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Yes i will get the booster. Im waiting a little while to hear from other people and their reactions.
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Thank you so much for sharing your experience. I was down for 2hrs. My whole face went numb Finally got to speak to my doctor. He was confused or just not listening. Anyone who tried to take my message couldnt identify what I was talking about. He said I should go back to prior dosage. I’m going back to the 15mg for awhile more. If I find I have to do more or even less it is good to know. My impression is Firdapst is last to do and i don’t want my body to get immune to higher doses. I finally got relief.
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It was my fault. I wanted to confirm that my insurance would pay for last month. It took too long. I’ll be on that faster this month
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I just bumped up to 20mg Firdapse. The side effect is reasonably scary. Double vision, numb face from nose down to chin. At 15mg it wasnt like this. I’m thinking of going back to 15mg. 15mg worked fine. It got me off the walker in the house and dont have the pain and weakness in my legs and arms. In the long run is 20mg part of the end result to being half way normal again? I will call my Neurologist tomorrow to see if he knows anything
I think he is learning along with me. -
I couldnt hear. It told me it wasnt avsil as ble anymore. I have an appointment on Thursday this will be intresting to hear. I will play with it and see what i can come up with.
I am on Medicare and Supplement insurance. My doctor told me Medicare only allows for 20 minutes and can only go over 2 medical issues. That was his explaination. -
Thank you
I am following what you find out! -
Price the only appointment i could get in our area for the Moderna Covid shot was 3 days after my IVIG and steroid infusions are tomorrow and every 2 weeks. Covid shot Wednesday. Appointments for the Covid injection is really hard to get and will be worse when it opens up for everyone.
Do you know of anyone who has had the shot that Close to IVIG? Being i see double it is hard to read all that is posted to find that answer
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Mine occur periodically when i am anxious about something. Good or bad emotionally. The same happens. Im weak and cant lift my right leg. My feet drag when i finally get up
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My arms and legs go weak it is hard to lift them. They flop and drop. Before treatment i would fall. Falling down steps was the finale in finding out just what was going on. My doctor ordered 1000 mg of steroid in the last IVIG yesterday and that has helped me today even my double vision has improved. Im a newby. Thanks for your comments
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I see the prices for Firdapse in USA. I could never afford it
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I was Diagnosed December 2020. The blood test came back as low. But my symptoms put me in the hospital 3 wks. Rehab 2 weeks. Im being treating for it with IVIG along with a steroid and Pyridostigmine and i hope it works. I have tube feed because. I got down to 99lbs. What i have read on this forum might be dated but i seem to relate to each. The double vision and swallowing are most challenging. I cant get feedback on double vision. I
have prisms for reading but cant wear them all the time. Sorry i got carred away -
Oh boy! Sorry the communication is poor but what you said came right of my diary. He does everything by the book so i really need him. He is the only dr in our area. Im thankful but frustrated.
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I forgot to mention. I went without Firdapst for 2 days and went back to original symptoms not able to lift my arms and legs being weak and loosing my voice. Have extreme pain.